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When Lily-Mae Morrisson celebrates her ninth birthday with her brother Evan at the weekend there will be no-one happier than her parents Judith and Leighton.

Parent advocate Judith Sibley, who lives in Claregalway, will speak about “Navigating clinical trials as a parent of a child with a rare disease” at next week’s conference which will focus on public and patient involvement (PPI) in research, at the Westwood Hotel on Wednesday from 10am to 3.45pm.